Saturday, December 22, 2007

The Politics of Autism

Researchers are seeing more and more cases of autism. A quarter-century ago, the best estimate was that only one child in 2,000 suffered from autism or related disorders (e.g., Asperger’s syndrome). In 2007, a Centers for Disease Control study of six sites found a rate of one in 150. No one knows how much is a real increase, and how much stems from changes in how we identify and classify autism.

Hillary Clinton has given autism the most attention. In November, she announced that she would spend $700 million a year on research, teacher training, and support services. At a campaign stop in Iowa, she said:

Now, when I was in law school, I took a special year at the Yale Child Study center. That was back in the very early 1970’s. At that time, science was still blaming parents for autism. And they particularly blamed mothers. And I remember reading some of the so-called research and in particular the work of one scientist who had a lot of national and international prominence for his theories. And I thought, you know, that just can’t be right, there’s got to be more to it to that. I later moved to Little Rock where one of my friends had a son with autism. And I spent time in her home, I spent time with her and her son and my instinct perhaps as a mother was that this could not be the explanation

Clinton was striking the right political chord. Parents of autistic children would recognize the “scientist” as psychoanalyst Bruno Bettelheim. They loathe his memory because his “refrigerator mom” theory wrecked thousands of lives before research exposed it as junk science.

BarackObama has stepped up, too. His health plan includes a section on autism: "He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind."

The Republican candidates, however, have been much less vocal. None of them talk about it on their websites, and have only barely touched on the issue in other venues. John McCain told an activist that he supports hearings into the causes of autism. Mike Huckabee got a $400 haircut from a New Hampshire barber, with the proceeds going to autism research. And ABC reports on Rudy Giuliani: “When told by a person with autism attending his event that `most’ private insurers will not cover people with autism, Giuliani said that he favored `high-risk pools’ for people with expensive conditions.” Parents of autistic kids will probably not like that idea.

And that’s it.

The GOP silence is puzzling. Millions have family members with the disorder. It shapes their lives and could sway their votes. It is not exclusively a Democratic or liberal issue. California’s 1969 Lanterman Act was a landmark in serving people with autism and other disabilities. Its sponsor was a Republican, as was the governor who signed it: Ronald Reagan. Last year, President Bush signed the Combating Autism Act. Its author was the very conservative Senator Rick Santorum (R-PA).

Michael Ganz, of the Harvard School of Public Health, puts the annual social cost of caring for and treating people with autism at $35 billion. There could be a political cost to ignoring it.